Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Anticipation

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If all goes according to plan, next week I will be traveling to Germany to research my second novel. (Where is the first novel, you might ask? It’s in search of a literary agent, a long process. Details at my author’s website.) The second novel is set in Germany during 1928-1938, and I’m heading for Berlin, Dessau, and Munich. As we all know, when it comes to travel (and life in general) the adage “Man plans, God laughs” is often apt.

So, fingers crossed.

This is the first time I have ever ventured abroad on my own. I never traveled as a teen or young adult, with the exception of a two-week, whirlwind trip with my sister in 1973, a gift from our grandmother, who wanted us to see her German homeland and get a taste of Europe. We traveled by Eurailpass, back when it was really cheap to go First Class, from London to Berlin (we took the train-ferry across the English Channel to Belgium, then flew into Berlin since access was limited because the country and city were still divided), and on from Berlin to Copenhagen, Amsterdam, Zurich, and Paris. We stayed in youth hostels, dragged our suitcases everywhere, saw a lot, but decided to come home a few days early because we were totally exhausted.

In recent years, Al and I have traveled to Israel and made several wonderful trips to Europe, plus a lovely visit to Canada this past summer, and I’ve gained a lot of experience with travel planning. With this trip, I’m putting all of that to good use. I’ve cleared my plan with my entire medical team, who have been universally supportive and encouraging. And Al and our daughter are, as ever, supportive, too.

After all the restrictions of the pandemic and the past couple of years trying to figure out what exactly has been going on with my heart and lungs, I am both grateful to be feeling up for the adventure and trying my best to stay healthy prior to and during my travels. More than just a trip I’ve been dreaming of for several years and planning for months, this is a personal-best challenge to myself. I need to know, as I approach my 69th birthday next month, that I can just do it.

So, if all goes according to plan, I will be taking a break from writing here for a few weeks. I hope to have some great stories and photos to share when I’m back at the end of the month. In the meantime, Dear Reader, be well.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Stefan Widua

Oscillations

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It’s that time of year here in New England when the temperatures ripple like a sine wave. One day it’s in the 40s, then we slide into the 30s and even the 20s, then up to the 50s. As I write this afternoon on President’s Day, it’s a relatively balmy 54°F. Later this week we’re expecting snow showers, and the weekend promises to be frigid.

Al is more sanguine about this than I am. “It’s winter,” he says, with a shrug.

So I layer up my sweaters and shed them as warranted. My fingers are cracking, like a sidewalk that shrinks and expands with winter’s thaw. I’m using up more bandages, as I always do this time of year.

The transition to spring is always the toughest on my digital ulcers, harder than in the coldest months, when the cold is more constant. At least, it used to be. With climate change comes more temperature ups and downs. A geographer friend once told me that our weather here in Massachusetts will become more like Virginia’s, and Maine’s will become more like ours used to be. His prediction seems prescient. So far, we’ve only had one short stretch of Arctic temps this season and hardly any snow.

I am profoundly concerned about the implications of a warming planet and am devoting volunteer hours to my city, helping to mitigate the effects of climate change locally. But, I must admit, my hands don’t mind. It’s selfish of me, but these milder winters are just easier to manage, without our having to move south. The transition to spring and summer will always be a challenge, because it’s the relative temperature change that plagues my ulcers. But shorter spurts of bitter cold? Less snow and ice? I’ll take it.

Life is a series of adjustments. Some we can predict. Others, we can’t. The older I get, the more I realize that staying nimble in the face of all that we can’t control is crucial to resilience.

And so, with just one more week of February ahead, as daylight grows notably longer and the switch to Daylight Savings Time looms on the horizon, I will continue to layer up and shed and layer up again, tend my fingers, and make sure I have a full inventory of bandages and other dressings. I can’t change the weather, but I can surf the sine waves.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Pittigrilli

Candy Heart Wish

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It’s Valentine’s Day, and we could all use a bit more love in this world. While I can’t send you a box of chocolates or a rose bouquet, Dear Reader, if I had my own little candy conversation hearts to share, here is the one message I’d print on them:

BE WELL

Easier said than done, certainly. But it’s a phrase that I’ve been thinking about a lot, especially since the pandemic. I use it to sign most of my email correspondence these days, business and personal.

Being well is more than just a physical state. We don’t necessarily have control over what our bodies do, especially with a disease as complicated as scleroderma and all its associated ailments. Assuming access to good medical care, however (and that’s a big assumption, given health care consolidation and the health insurance mess in the U.S.), it is possible to get treatments and medical support to ease the disease process. It requires recognizing and understanding your personal situation, learning what help is available and whom to trust, being a strong self-advocate, and following through on treatments and protocols.

There is a lot to learn about scleroderma, and a lot to process. My resources page links to leaders in scleroderma research and education, to help you. But the self-advocacy piece is, for me, the most important aspect of dealing with this disease for the past 40 years. I’ve learned to push my doctors for information and explanations, and to share my fears, as well. I’ve also learned to challenge treatment recommendations that don’t make sense, and how to find research that I’ve shared with my medical team to move in a more logical direction. And I make sure that I get all my questions answered in every appointment, regardless of how long it takes. I’m grateful that my medical team respects me for it, as much as I respect them.

In this sense, to BE WELL means that you are not your diagnosis. You are a complex individual with a complicated disease that requires you to stand up for yourself and what you need to remain as healthy, active, and involved in life as you are able. Wellness is as much a state of mind as a physical state. If there is one message that I hope this blog conveys to anyone with scleroderma, newly diagnosed or a veteran like me, it’s about living, not the diagnostic label.

So, happy Valentine’s Day to all. Be well.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Laura Briedis

Inner Workings

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An article in Monday’s Washington Post caught my eye: “Earth’s inner core seems to be slowing its spin.” This gave me pause. So, I wondered, does this mean that eventually our planet will stop spinning and we’ll all be flung into outer space in the absence of gravity? Fortunately, a sentence below the headline reassured, “This isn’t the beginning of the end times.” Good to know.

The reporter went on to explain what exactly constitutes the Earth’s inner core (“a superheated ball of iron slightly smaller than the moon”) and various ways that deep-earth scientists measure its spin, and the debate over whether the inner core is actually slowing, or slows and speeds up in cycles, and related implications. One of the most interesting takeaways—all this internal movement that I never knew about plays a key role in establishing the Earth’s magnetic field, which protects us from cosmic radiation. It also influences the length of each day. Which, it turns out, has been increasing by milliseconds for centuries.

How this unseen, spinning molten mass affects life on Earth remains one of the mysteries of our universe. Somehow, this strikes me as totally appropriate. So much of what matters in life is hidden beneath the surface. How well do we really know others, let alone those whom we’re closest to, let alone ourselves?

And so, on this snowy afternoon, as I watch huge flakes drifting by my window, bending evergreen branches in our backyard beneath a plump coat of white, I’m grateful for that mysterious ball of molten iron, whirling well beneath us, ensuring that we won’t be destroyed by cosmic rays. So much seems uncertain in this world, I’ll take it on faith. And a millisecond longer day, too.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Javier Miranda

Lessons from My African Violet

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For the first time ever, I have managed to nurture an African Violet rather than kill it by drowning its roots or total neglect. In fact, a plant that was given to us last Passover has flourished to the point of blooming, just in time for New Year’s. This is nothing short of a miracle. I guess that tending my bonsai has taught me a thing or two about what my plants actually need.

To wit, a few lessons from my African Violet:

  • Check your hypotheses before acting. If the leaves are rigid, there’s plenty of moisture, even if the leaves curve downward.
  • Trust in Nature’s wisdom. The way the leaves grow protects the soil and helps the plant retain moisture.
  • Find the balance point between too much and too little. My African Violet prefers dappled sunlight, best achieved when shaded by my bonsai (perhaps they commune, too) and watering only when the soil is nearly dry.
  • Be patient. With good care, it will bloom when you least expect it.
  • Appreciate the simple things in life. There is peace and joy to be found there.

Lessons to live by as we enter 2023. Happy New Year, Dear Reader.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.